Best of the Internet
- American Association Of Respiratory Care This is a must see site for anyone who wants to stay updated on what's happening in the field of respiratory care. This site includes ongoing political issues, respiratory care, from the caregiver level to the research stage. It also includes a link to all state respiratory organizations and ongoing projects within each state. It includes testing sites to determine your weak areas that you need to work on to manage your own care.
- The Emphysema Foundation This site is a great source of information and features the Patient Education Empowerment Program (PEEP). Especially valuable are details involving definitions, symptoms, and medications. There is a section on breathing exercises and physical reconditioning as well as excellent guidelines for staying healthy. This is a great web site.
- Mount Sinai Medical Center There is a lot of information on this site, with an emphasis on several in-depth and on-line articles. Interested in an extensive discussion concerning the history of Oxygen therapy? Similarly there is a full article concerning arterial blood gases. Well worth a visit.
- Medline This is arguably the finest research web site for medical information on the internet. Until June of 1997 it was available only through subscription. Now it is free. Enjoy.
- Abbreviations, Acronyms & Glossary NoAirToGo's site was developed and is maintained by Sandi Wood. It is by far one of the best quick references for determining the meaning of words and phrases pertaining to COPD and other pulmonary diseases.
- A Good Reference Here is a highly regarded source of information on pulmonary diseases - The National Jewish Medical and Research Center in Denver.
- Mayo Clinic's special section has extensive content on chronic obstructive pulmonary disease. They are striving to be the most complete resource available on COPD, offering information on symptoms as well as treatment options.
Organizations
- COPD - Learn More, Breathe Better a Program of the National Lung and Heart Institute of the US Dept of Health and Human Services. Information for smokers and those with a chronic cough to learn more about COPD and how to live with it.
- Alpha 1 National Association The Alpha1 National Assoc. started with a small local support group in Minnesota and has grown to represent the Alpha community grandly. With several thousand active members it is the most influential Alpha1 organization in the world.
- Alpha 1 Foundation The Foundation is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection and a cure for Alpha-1.
- American College of Chest Physicians As their site states "Over 15,000 physicians are members of this unique international multidisciplinary society dedicated to the advancement of research, teaching, and the clinical practice of cardiopulmonary medicine, surgery and critical care."
- American Lung Association (ALA) The ALA is the largest lung association in the United States. Its interests are far wider than just COPD and Emphysema - as well they should be. They are a major force in trying to reduce smoking, and the influence of the tobacco industry, in the US. Our link points at their Emphysema page. Be sure to check their physician's side of the Association - the American Thoracic Society
- Canadian Lung Association The CLA recently redesigned their web site. They combined relevant data into a new section on COPD.
- National Institutes of Health This is the Federal agency responsible for health care in the United States. An important organization that helps to foster research and government health care policy.
- National Board For Respiratory Care This site is a must for all pulmonary patients. It covers all areas of respiratory care from computerized self testing and evaluation of respiratory diseases to care and education. Also includes a link to identify state licensing agencies and procedures for verification of credentials for respiratory care professionals.
- National Lung Health Education Program (NLHEP)
Headed by Dr.Thomas Petty (considered by many as the father of oxygen therapy) and his research associate, Louise Nett, RN, RCP, FAARC, who have been active for many years in the care of patients with COPD. They are now focusing on the early detection of COPD. It was started at the request of the National Institute for Health--Lung Division to spread the message that finding the disease early makes for better treatment. In addition to information concerning the activities of the NLHEP, this web site also provides some very good basic information on COPD. Dr. Petty and Louise Nett co-authored a book, Enjoying Life With Chronic Obstructive Pulmonary Disease which is still a very useful one-book reference on our affliction. You may purchase it though our Savings Pages.
- Healthline Networks Healthline provides a very comprehensive overview of COPD as a critical starting point for individuals and/or their loved ones.
Patient Support
- Alpha1 Support Alpha 1 provides many functions for the individuals affected with this "brand" of lung disease.
- Chronic Lung Disease Forum This is part of the Cheshire site (see our Best of the Internet). Not limited to COPD matters, it attracts both patients and professionals interested in, or suffering from, Chronic Lung Diseases.
- Second Wind Lung Transplant Association, Inc. The Lung Transplant Association runs both a web site and internet mailing list. This is an important list for anyone interested in the subjects of lung transplantation or lung volume reduction surgery.
- Geriatric Service of America is a respiratory treatment company that supports seniors living with chronic lung disease by providing low-cost and no-cost treatment, prescription medication and therapy for lung disease sufferers.
- Breathing Better, Living Well provides a wide range of helpful informational and support materials for patients and their families living with chronic lung disease. It prides itself on providing easy-to-understand original
information and stories, an active community page for sharing questions, answers, and encouragement with others, a bookstore, and more.
- Mesothelioma Center is committed to providing the latest, up-to-date information on asbestos issues as well as related cancers (that attack the lining of the lungs, etc.), treatment options, and where to find doctors in your area to treat cancers such as malignant mesothelioma.
Smoking Cessation
- SmokeNoMore Program The web home for our own SmokeNoMore Program compiled by our long time member, Olivija Gwynne. The site is chock full of information, tips, and hints to help those on their quest to a smoke-free life.
Patients Speak!
- COPD Survival Guide A wonderful paper, written by Bill Horden, that offers a patient's perspective on the effects of COPD and emphysema. Unique.Pulmonary Wellness Support Groups Another paper by Bill Horden, with his ideas concerning a more standardized approach for judging and organizing pulmonary rehab/wellness programs. This page continues to grow in its depth and breadth, and is a wonderful patient resource.
Research Links
- Healthfinder Healthfinder is a search facility sponsored by the United States Government. It has some COPD information.
- The Merck Manual Online One of the fundamental medical texts, along with The Physicians Desk Reference (PDR), the Merck Manual provides basic medical information. The site features a searchable index.
- Virtual Hospital Run by the University of Iowa, this is an excellent research tool for basic information regarding many medical subjects. Best if used with their search tool.
- National Jewish National Jewish Medical and Research Center in Denver is a leader in Asthma and other pulmonary care and research.
- Kitchen Link This website is a must for people with special diets requirements such as COPD, emphysema, lung transplants, diabetes, coronary problems and many other special dietary requirements. It also has printout recipes, bulletin boards and chats for exchanging dietary ideas and a multitude of other things of interest to the culinary experts.
- Disease Conditions Links This website provides a directory of useful disease and conditions resources.
Drugs & Pharmaceuticals
- https://www.rxlist.com/ Use this site to search for references to drugs in other articles on the web. It lists the top 200 meds in alphabetical order, their usage, normal doses, interactions, generic and alternate brand names, prices and ordering information. In addition, it has a link to a doctor and pharmacist on line.
- PhRMA's Listing For Free Medications To make it easier for physicians to identify the growing number of programs available for needy patients, member companies of the Pharmaceutical Research and Manufacturers of America (PhRMA) created this directory. It lists company programs that provide drugs to physicians whose patients could not otherwise afford them. The programs are listed alphabetically by company. Under the entry for each program is information about how to make a request for assistance, what prescription medicines are covered, and basic eligibility criteria.
- Careinternet.com A clinical research site that specializes in phase II-IV COPD/Emphysema trials. They help in the production of new medications for the treatment of COPD. These drugs may slow down the progression of COPD and relieve the symptoms. Early detection is important, so those diagnosed and those with symptoms but no diagnosis are invited to participate. Participants may be eligible to receive financial compensation for time and travel, as well as study related medications and treatment at no cost.
Military Medical Programs
- Tricare Military Health System This is a very well organized and informative site for military retirees and
their dependents. It has resources for locating Primary Care Providers in
your local area. Benefits and entitlements under the tricare health care
system and outlines the procedures used for checking and submitting claims.
- Veterans Administration (VA) Health
Care System This site has a wealth of information on veterans entitlements, including educational benefits, assistance in purchasing a home, locations of veterans
hospitals, applying for disability benefits and reduced costs for medication.
All veterans should review this site you may be surprised at your entitlements.
Medicare Information and Assistance
- Centers for Medicare & Medicaid Services (CMS) The Centers for Medicare & Medicaid Services (CMS) is a Federal agency within the U.S. Department of Health and Human Services that administers Medicare, Medicaid and the State Children's Health Insurance Program (SCHIP). This site is very detailed and provides search engines for researching the specific topic in which you may be interested.
- Center for Medicare Advocacy, Inc. The Center for Medicare Advocacy, Inc. is a private, non-profit organization which provides education, advocacy, and legal assistance to help elders and people with disabilities obtain necessary healthcare. We focus on the needs of Medicare
beneficiaries, people with chronic conditions, and those in need of long-term care. The organization is involved in education, training and litigation activities of importance to Medicare beneficiaries nationwide. The service is free in Connecticut and for a fee for others.
Miscellaneous Links
- Nonin Nonin manufactures oximeters, large and small. They have introduced the GO2, a personal fingertip pulse oximeter designed especially for the patient. One can be purchased on-line at GO2.
- Doser A counter that is mounted on a Metered Dose Inhaler (MDI) to keep track of inhaler use. Electronically displays doses per day and doses per month for monitoring prescribed usage, and provides a way to know when an inhaler is empty.
- The Breather was invented by a pulmonary rehabilitation therapist as a device to help people do pursed lip breathing properly and to strengthen both inhaling and exhaling. The Breather has FDA approval for its intended use but no prescription is required.
- Honeywell Room Units HEPA air filters are able to remove many of the air-borne causes of pulmonary irritation. This page features several units suitable for cleansing one or more rooms. Also worth investigating are whole-house units which becomepart of the central heating/cooling system.
- The Breathing Space A commercial site but also a definite must see website for people with pulmonary illness. In-depth explanations of the illness, procedures and practices for maintaining as healthy a lifestyle as possible as well as a
snail mail quarterly magazine distributed free, upon request, an online newsletter and magazine. Also includes assistance in smoking cessation and detailed glossary of medical terms.
Lung Volume Reduction
LVRS is a technique in which parts of the emphysemous lung are surgically removed. While this may sound strange, even cruel, it should first be understood that the parts removed are areas of the lung that are no longer functioning. This non-functioning lung fills areas of the rib cage (our lungs' "case"), thereby leaving less room for normal lung breathing movements. Once the diseased lung is removed the remaining, functioning, lung can more easily and completely expand and contract, increasing overall lung function. This technique has been quite successful for some. But be aware that not every COPD patient is a candidate for this surgery. One location that is actively involved in LVRS (and transplantation) is
- The Chapman Lung Center in Southern California.
Lung (and Lung/Heart) Transplantation
Oxygen Therapy and Oxygen Equipment
- American Lung Association For people who do not get enough oxygen naturally, supplements of oxygen can have several benefits. Supplemental oxygen can improve their sleep and mood,increase their mental alertness and stamina, and allow their bodies to carry out normal functions. It also prevents heart failure in people with severe lung disease. A doctor's prescription is required.
- Portable OxygenWritten by an oxygen user and subscriber to the Family of COPD Programs, Pete Wilson, this web site contains almost everything you want to know about portable oxygen, liquid and compressed, from the perspective of a user. It includes an article on airline travel with oxygen, product information, proper usage and many links to other valuable sites on oxygen usage and supply.
- Living With COPD Written by an oxygen user, this web site provides information concerning several subjects concerning COPD. It is particularly interesting to those interested in the HELiOS� Oxygen system.
Equipment
Providers
- Lincare is a provider for oxygen therapy. This is a nice site, with useful information for COPD patients.
Disabled Equipment and Traveling
- Liberty Medical Manufactures concentrators and converters that can be used in automobiles or Recreational Vehicles. They also manufacture emergency oxygen supply systems and hand held oximeters. Well worth checking into if you need a mobile concentrator for travel or additional mobility.
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